I am new to RSD (reflex sympathetic dystrophy syndrome). I was diagnosed in October/2010 but have had the pain for 4 months now. I have been trying to find someone to talk to abou this disease and also doing as much research as I can myself. There is nobody in my area that has RSD, so I am trying to find someone that can help me better understand. Please Help!! Thanks, Jodie
Welcome to the group but not to RSD. You would be surprised at how many people really do have this. They say it's rare but I don't think so and haven't for at least 5yrs as I've met way too many people that do have it; mostly online.
I hope you stay in this support group and feel free to ask anything.
I've had it for 11 1/2yrs now also researching it.
I'm now looking into something called; Calmare Pain Treatment in Philadelphia, PA. I just stumbled upon this 2 days ago.
I haven't researched it enough to know if it's worth trying or not but I will continue to look at this and any other option available.
I've never had an SCS or pain pump and am on strong pain meds but sometime around the 5yr mark I was able to begin to have some more quality in life not allowing RSD to define me any longer.
I've remained on the same med/dose for over 9yrs now fearing my meds.
Please feel free to add me as a friend.
If you don't mind me asking, where did your RSD start/begin and how?
Has it spread since you've had it?
Mine started in my right foot after an auto accident where I put on the "imaginary brake" and spread quickly up my right leg and into my right hip area. Since only January 2010 it has spread up into only the right side of my back.
I know this is a very tough pain disease to go through and even get treatment for. I was in PT for almost 2yrs but it was worth it as I had to re-learn to walk again. I hope you are getting PT.
If we can help in any way, please let us know,
Also go to rsds.org and rsdhope.org as a couple of wonderful sites with research/news about RSD.
We do need all the info and education we can get as it's sad but true that many in the medical field have no clue what RSD is even though it's been known since the Civil War Era.
Please add me as a friend if you ever want to talk or ask anything. I'm not a doctor/nurse but I have researched this for over 10yrs after getting RSD 11 1/2yrs ago.
My own pm doctor that diagnosed me all those years ago said to me this summer that I was the most intelligent RSD patient he has ever had. Even though he did his own residency at the Mayo Clinic he told me that I taught him how to better treat people with RSD and anyone in chronic pain.
If I don't know the answer, I can find it for you and would be more than happy to.
I am new to this group also but have found already that everyone is so
great and wants to help. So ask away. I have had RSD for 20 years and
I am still digging, reading, and learning about it. Go on line and read
everything you can and don't worry if you don't understand it all. Someone
suggested RSD.hope. It is a great site. Check on AskRSD. It is by a
lady - not an organization - but she has some great information - articles,
links, a list of support groups, and stuff some of the other sites don't have.
One thing I would say, when you are reading all of this information, take
it with a grain of salt - as the old saying goes. You will not have every
single S&S that they list and your pain may not progress like they say.
Everyone's RSD is different and what works great for one does not work
for another. It is a wierd disease! I live in north Louisiana - a backwards
place - and I don't know anyone that has RSD either. I will be happy to
talk to you any time if you need or want to. I don't know all of the "group
etiquette" and rules, so if I screw up, please forgive me and let me know.
Glad you are here and we - and anyone else - can be the "new birds."
Let us know how you are doing.
The pain stinks! I hate it! All different types of pain. I have rsd in all four extremities, parts of my back, parts of my face, my tongue, and the roof of my mouth. It is also affecting my vision and immune system. Never stop researching. You might want to check out rsdrx.com and rsdfoundation.org. watch the videos, you will learn a lot from other rsd patients. You can talk to us here on the forum. Also, find a good friend you can confide in. They may not be able to understand everything you are going through, but they can be a listening ear. I have a friend with polo (Not many living adults with that disease). She has a lot of pain issues as well. Sometimes we laugh at ourselfs. Like when I said that I wanted to take off my arms and legs and set them aside for a while so I could have a brief repreave from the pain. She also has pain in her arms and legs, so she could relate. She was also a good support when I was telling her that I felt worthless.
She was able to bring me out of my funk and we both got to laughing. Laughter is great medicine. You might be able to have a local paper do an article on you and rsd. Someone in my community got the local papers attention and now I know that I am not the only one in my community that has rsd. His family is working with the local hospital to set up an rsd support group. Another lady saw the paper as well and emailed him. You will be in my prayers. Bless you and keep posting. We are all here for you.
Am going on my 24th year dealing with RSD & with the research I've done over the years, plus dealing with the symptoms everyday, 24/7, I'm not here to brag, but to help those who need it.
There isn't a day that goes by where I don't learn something new. As someone stated before, the disorder goes back to the Civil War era, yet many & most Dr.'s know very little about it & treating it.
I had the mistake of having a Lumbar Surgical Sympathectomy done. From what I've personally lived through, learned & read, it's the wrong to have done.
If asked any questions, I'll do my best to help, now finally having a wonderful, caring, willing to listen PCP, seems to have helped with the daily battle of RSD & the pain that goes along with it.
After nearly 10 years of being hospitalized at least once a month due to the pain, being given literally nothing for pain when sent back home & receiving a phone call from my health insurance company, while being hospitalized, that they would no longer cover my hospital visits due to pain, when I could be "treated at home," being left thousands of dollars in debt, I finally realized it was time to find another PCP, which I did & haven't been hospitalized for pain since.
Please go ahead & ask away...
When I first contacted rsd some 12 yrs. ago, I found I couldn't take any of the so called nerve medications, no matter how hard and I tried with them all, they all just put me out in no where land, I could hardly keep myself awake, and couldn't remember anything, and none of them really go to the cruix of the pain. What really did help was to get away from as much of the stress in your life as you can, and also one big thing with me, I moved to Fl. What a relief that was for me. My Dr. suggested this for me. It caused me ot have a divorce, but then it was worth it not to burn, and I figured if my husband loved me enough, he would have just tried on a temp basis just to see if it worked. The rsd did make me do some strange things, but I learned an awful lot too. Get yourself a good Pain Managment Dr. He/She can do the world to help you. I also had a spinal nerve stimulator put in and that helped for quite a while too. Hope all this helps you.
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